Weighing the Pros and Cons of Hydroxyurea Treatment
Several decisions I make regarding my health are weighed up and thought out on a finely balanced scale. A sickle cell crisis can happen at any moment, so doing what I can to avoid my triggers is…
Sickle Sagas — Dunstan Nicol-Wilson
Dunstan Nicol-Wilson is a clinical project manager from South East London, United Kingdom. Dunstan has his master’s in public health with a global health focus. Dunstan was diagnosed with the “invisible disorder” sickle cell disease from birth in 1993. He hopes that his column will raise awareness for this disease, encourage others to share their stories, and showcase all the ups and downs of living with a rare condition. Dunstan loves anime, cooking, and Manchester United.
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Chatting with mothers of children with sickle cell disease
Mentoring young people with sickle cell disease has been an enriching endeavor. I’ve learned and shared a lot about how the disease affects people differently. As a result of these differences, I must figure out how…
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Why I Started Advocating for Blood Donations
As someone with sickle cell disease, I’m very passionate about blood donations because this selfless act of kindness can change a person’s life, or even save it. Many donations go toward blood transfusions, a critical treatment for sickle…
My Journey to Self-acceptance With Sickle Cell
Advocating for the sickle cell disease community means drawing on my experiences to help communicate the issues its members are facing, and to attract, engage, and educate a general audience. But this takes a toll on me, as many…
I Don’t Need a Reminder of My Life Expectancy With Sickle Cell Disease
As a sickle cell advocate, a key skill I’ve had to learn is patience. I need patience to listen, to understand, and to let go of negativity. Early in my advocacy journey, I was speaking at an event, and…
My Goals for This Year’s Sickle Cell Journey
A new year often means a fresh start, with new goals, habits, and challenges. For the past few years, to help me better focus, I’ve been writing a list of goals I want to achieve in each new year.
Taking Charge of My Healthcare During Routine Checkups
As part of the U.K.’s National Health Service, it is common practice for sickle cell disease patients to have routine checkups with their hematologist. These routine checkups include collecting blood and urine samples, reviewing patients’ …
Learning How to Say No With Sickle Cell
At this stage in life, I know my body pretty well. I’ve gotten better at avoiding my triggers, which means I have fewer sickle cell crises than I used to. For example, I try not to expose myself…
The Tough Spanish Sickle Cell Lesson
Once a sickle cell crisis surpasses my manageable pain threshold, it sadly becomes time for me to go to the hospital. Hospitalizations always fill me with despair and anxiety due to past experiences, so I reject the notion…
Tips for Preventing a Sickle Cell Crisis While Traveling
Traveling is one of my greatest passions. I enjoy seeing new things and immersing myself in different cultures, especially through local cuisines. Living with sickle cell disease means I have to take extra precautions when traveling, especially amid the…
‘No One’s Listening’ to Sickle Cell Patients, and That Must Change
The results of a government inquiry tasked with investigating the failures of sickle cell care in the U.K., published in a report titled “No One’s Listening,” reveal evidence of substandard care, inadequate training of healthcare professionals, and attitudes…
Finding a Balance Between Supporting Others and Protecting My Health
As an adult, I’ve been privileged to have a small community of sickle cell patients that I can connect and share experiences with. As winter approaches here in the U.K., I’ve noticed on social media that many sickle cell…
I Want to Get Better at Predicting a Sickle Cell Crisis
In the animated TV series, “One Piece,” a skill called Kenbunshoku Haki lets its users glimpse into the future, allowing them to dodge bullets and punches, and in some instances, even evade…
